ST. PETERSBURG, Fla. — Amid controversy in the Terri Schiavo case regarding how to treat the severely disabled, the National Right to Life Committee has drafted a model state law that seeks to protect patients from having their feeding tubes removed.

The National Right to Life Committee law would protect incompetent patients who are not imminently dying from having their feeding tubes removed. The law would create a presumption that those incapable of making health care decisions would wish to get food and fluids “so long as their provision is medically possible, would not hasten death and can be digested or absorbed so as to sustain life.”

This presumption would not apply if the person has specifically authorized withholding or withdrawal in an applicable legal document — or if there is clear and convincing evidence the person gave express and informed consent to rejection of food and fluids. Casual or uninformed statements could not be used to meet the “clear and convincing” test.

Burke Balch, director of the Robert Powell Center for Medical Ethics, which is affiliated with National Right to Life, said the law is needed because starvation and dehydration of disabled patients is “far from being an isolated incident.”

“The denial of food and fluids in less-publicized cases is taking place in nursing homes and hospitals across America,” Balch said.

Balch said he has received inquiries about the model bill from legislators in several states.

“The case of Terri Schiavo shines a light on the frightening reality that many in the medical community judge patients on a quality-of-life basis,” he added.

Shock

Many were shocked over the treatment of Terri Schiavo. The 39-year-old Florida woman's feeding tube was removed in October by a court order sought by her husband. The Florida State Legislature and Gov. Jeb Bush intervened, enacting a law that saved her from a slow death by dehydration.

Schiavo's husband, Michael Schiavo, has gone to court to overturn what is now known as “Terri's Law,” calling it an unconstitutional infringement on his wife's wishes and privacy.

The American Civil Liberties Union of Florida has joined his legal team in challenging the law, calling it a “dangerous abuse of power by the governor and Florida lawmakers.”

The law “sets a dangerous precedent that could have an impact on anyone who makes a private life-and-death decision that contrasts with the ideologies of our state lawmakers,” said Randall Marshall, legal director of Florida's ACLU.

Terri Schiavo has been incapacitated since suffering severe brain damage 13 years ago. Her parents, Bob and Mary Schindler, have fought for years to keep her feeding tube in place in hopes she might be rehabilitated.

Though she left no written directives, her husband claims she once told him she would not want to be kept alive with the help of “tubes.” Many consider her feeding tube an artificial means of keeping her alive, though traditional Catholic teaching considers food and water as basic care every patient has a right to.

Living Wills

People on both sides of the Schiavo case, from the Florida bishops to Michael Schiavo's “right-to-die” lawyer George Felos, agree everyone should seek to make his wishes regarding medical care known in a legally binding manner. This can be done by preparing a living will, appointing a health care proxy or leaving written instructions in some other definite form.

But the National Right to Life Committee warns that living wills have serious drawbacks.

“In many states you may not know what you're really signing,” the committee said. For the purpose of a living will, in many states, “you are legally in a ‘terminal condition’ even if your life could be saved — so as to live indefinitely — by medical treatment, so long as you would still have a permanent disability of some kind.”

The laws of most states also define the medical treatment that is refused by their living wills to include food and water.

As an alternative, National Right to Life offers a “Will to Live,” an advance directive that individuals may enact to instruct medical personnel on end-of-life care. Its presumption is keeping the patient alive, emphasizing the sanctity of life rather than quality of life.

The number of people downloading the document from the organization's Web site has increased dramatically since the Schiavo case became national news, a National Right to Life spokesman said.

Catholic Principles

Catholics in particular might well ask what they should consider in the drafting of a living will or “will to live.”

The U.S. Catholic bishops offered direction when they stated in the 2001 document “Ethical and Religious Directives for Catholic Health Care Services”: “There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.”

The Church does not require patients be kept alive at all costs, since death is a natural process ordained by God and is the gateway to eternal life.

“The duty to preserve life is not absolute,” the bishops' directives state, “for we may reject life-prolonging procedures that are insufficiently beneficial or excessively burdensome.”

Also, the Catechism of the Catholic Church states: “An act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God” (No. 2277).

Since the medical issues involved can be complicated, many Catholic moral thinkers advise against being too specific when enacting a living will. To state you would not want any tubes or a respirator might mean you will be denied temporary lifesaving procedures that would be used until you could eat or breathe on your own, said Conventual Franciscan Father Germain Kopaczynski, a medical ethicist with the National Catholic Bioethics Center.

“The best way is to appoint a health care proxy who would enact your express wishes in each situation, if you are not able to speak for yourself,” he said. “I don't think anyone is smart enough to put in detailed writing all the possible medical conditions and possible treatments he may face in the future. But if you have someone who knows your mind and the teachings of the Church, that is best.”

Stephen Vincent is based in Wallingford, Connecticut.